How can I justify my son's existence? Do I need to? Why do I feel the need to? As I've noted in multiple posts over the last year, people with disabilities exist in a precarious place in the ever-more rapaciously capitalist systems that drive America, whether forward or into a ditch, no one can say right now.
Robert had a wish granted through the Make-A-Wish Foundation at the very end of August, in Vermont. A day out of time, we all felt "worth" something, Robert's situation elevated to the level of the special, a team of people guaranteeing him a perfect day, just because, outside of any economic measures of worth. He met Big Time Rush, a boy band with a Nickelodeon TV show--four guys, Kendall, Logan, Carlos, and James, who needed no prompting from me to interact with Robert and who exuded kindness and generosity. Buy their albums, watch their show. These are good human beings.
We left Vermont two days after Hurricane Irene passed through, eradicating roads and bridges throughout the state, particularly in southern and central Vermont. I made the executive decision to take the ferry at Charlotte to Essex NY, hoping that that would offer a more secure path to the Northway (I-87).
Essex had no electricity and the ferry had to dock manually, which seemed to involve workers reaching, missing, and reaching again for thick cables with large hooks attached to them--balanced on the edge of the ferry as it bobbed gently between the giant wood palings that serve as pocket at the dock.
Once off the boat, I followed the blue signs for the interstate, the roads clear and dry, the sun shining. One by one, we were stopped in our tracks by orange signs on blockades that read "bridge out, road closed." Three of them, total. We were about to turn back, take the ferry across the lake back to Vermont, and try to pick our way south some other way, when someone local happened to drive by on roads that were largely deserted. We flagged him down, explained our plight--and, rather than tell us, you can't get there from here, he said: take a left on that dirt road, go to the end and take another left, and there's the entrance to the interstate. And we did.
And that's what I wish I could find. Someone to tell me how to bypass this question of "worth" where Robert is concerned. Because all the dialogue is couched in that, katekilla be damned. And for the last several months, as I remained silent and I thought, my thoughts ran into one orange "bridge out" sign after another. You can't get there from here. What does Robert contribute? Is it worth is to educate him in a world of diminishing resources? Provide him with medical care? If he can't hold a job, what can he do?
These are all questions posed by the capitalist society in which we are enmeshed. And I'm not necessarily anti-capitalist; however, at a certain point, I dig in my heels when all of life--its joys and sorrows and human relationships and beauty--is couched in economics, supply & demand, relative value and the like. Is there no other framework in which to argue these points, other than the mushy mommy perspective, which no one really respects, but in which society will indulge me, all the while acknowledging my "emotional" state: the one where I just stand up and say, hey, my kid is worth something just because he's a human being.
So I kept reading Power, Sex, Suicide: Mitochondria and the Meaning of Life, hoping that I'd find some answers. And I did, sort of, when Nick Lane began to toss about the divergent opinions relative to neo-Darwinism, theories of cells, microbiology, and evolution. Is nature really red in tooth and claw? he asked, quoting Tennyson. Lane notes arguments about a book, The Selfish Gene, by the scientist Richard Dawkins, who argues something about natural selection taking place at the level of the gene, rather than at the level of the cell.
As it turns out, the microbiologist Lynn Margulis, who studies bacteria, disagrees with this, seeing a world in which the corollaries of competition and natural selection are complicated by natural systems among bacteria (and also, possibly among eukaryotic cells) that promote the formation of collaborative and cooperative communities. Odd how this disagreement seems to underline stereotypical differences between men and women.
Lane steps in and notes that "both see the individual as a fundamentally collaborative entity," and that Dawkins himself, in responding to Margulis, says he believes that "selfishness and cooperation are two sides of a Darwinian coin." Furthermore, Lane comments, "true individuals [are those] in whom all selfish interests are subordinated to a common purpose." [all on pages 196-8] And this all speaks to a much more sophisticated understanding of Darwin than I had ever absorbed, although I have read On the Origin of Species. Ahem, not "the origin of the species." Right.
Within popular culture, all of Darwin is reduced to the phrase, "survival of the fittest." And that's annoying because it cues in the popular imagination, even my own, an image of a weathered farmer in a feed store cap standing over a three-legged calf with swallowing difficulties and other functional defects, his thumbs in his overalls while his wife twists her hands in her apron and tries to hold back tears as the calf dies, saying, sonorously, "survival of the fittest, Marge."
And that's the sort of image that people like katekilla transfer to people with disabilities: survival of the fittest. And 288 other bobble-heads agree. Who can argue with that, they think?
And, out there in the wild, nature certainly is red in tooth and claw. Cue the clipped British tones of the voice-over in countless public television wildlife documentaries as the zebra races ahead of the lion, until the lion stumbles and gives up: "today, the race won and the zebra survives to face another day."
But human society rather confounds all of those Darwinian truisms. Consider Ke$ha.
This summer, driving about on errands in my typical slightly rebellious listen-to-catchy-bad-crap-on-the-radio kind of declasse style, I found my interest piqued by this song that found its faux-emotional climax in the line, "the party don't stop 'til I walk in," uttered with the odd tonality and halting style of an incredibly self-confident drunk. Tik tok. Yes, brushing my teeth with a bottle of Jack, leaving for the night and not coming back are not part of my world at the moment. And, therefore, mildly interesting.
Plot Ke$ha down in the middle of the Arctic and she'd freeze her junk solid (not quite like a brick house), or in the jungle where she'd be gobbled up by a panther or a very large snake quite quickly. Even on the mean streets of LA or NYC, brushing your teeth with a bottle of Jack and stumbling about in a drug and alcohol induced stupor because the party don't stop makes you more vulnerable to all sorts of human predators.
Ke$ha survives and thrives (outside the wild) because we live in a man-made environment in which her looks, her voice, and her performance value make her valuable to other people. Otherwise her ass-ets are rather limited in duration and scope. That is, human society is not driven by the laws of the jungle. And what will happen to Ke$ha in the long run as she ages and, hypothetically, becomes less valuable? Survival of the fittest--having spent all her money, she wanders the streets?
Dunno. So cue Herman Cain, I suppose:
"Don't blame Wall Street, don't blame the big banks, if you don't have a job and you're not rich, blame yourself! It is not a person's fault because they succeeded, it is a person's fault if they failed. And so this is why I don't understand these demonstrations and what is it that they're looking for."
Which the International Business Times refers to as Herman Cain's cult of self-sufficiency. Although I'm not sure I follow that logic about failure and success, I do believe Herman Cain has the selfish gene, and not the one Richard Dawkins wrote a book about.
Which brings me to Occupy Wall Street and cellular biology. "Not a person's fault because they succeeded"--meaning don't blame me if I'm a successful individual, rising above my fellow humans. I'm self-sufficient, you're not, I deserve to survive. The self-sufficient individual as king of the universe.
There's a reason all of these terms cluster together. In our current political environment, we are asked to see these as positives. But what if they're not? Is it really better for a few people to survive, thrive, succeed, while the majority of people do not? What does self-sufficiency mean, or is it another term for selfishness?
Dating back to early modern England, the body was used as a metaphor for politics--the body politic. The king, of course was the head, and the peasants had to assume the role of somewhat less appealing organs.
In cellular biology, the body, the individual, offers a similar metaphor: the individual is really composed not of a single entity, but of thousands of cells working in concert and "subordinated to a common purpose." Even the head. Even the brain. The rise of the individual, or, in this case, the determination of a single cell to assert its independence from the body, is not at all a good thing. It's called cancer. Cancer is when a single cell decides it doesn't have to do what the others want anymore--it can succeed on its own. And it does. And it metastasizes and grows and becomes "successful" at the cost of the entire body.
And that's part of what Occupy Wall Street protestors are saying: big business and corporations have become a cancer in the body politic. The demonstrations ask us to consider what our common purpose is, because the 1% is working against the common interests of 99% of this body. And tearing it apart.
I can't tell you what Robert's value is exactly. Just that he's a part of this body, just like other people with disabilities are. And our bodies have an appendix and unused larynx folds and tonsils and our genes are composed mostly of noncoding DNA. As a highly intelligent and knowledgeable research scientist told me yesterday: looking at our DNA is like looking at the world composed of cities, where most of the population is, and large stretches of rural areas, and even larger stretches of unoccupied lands and oceans. The pieces of our DNA that actually code for proteins are the cities.
I would add, but the rest of it is still there. We don't know why. But scientists are learning that even the useless pieces, the noncoding regions, are retained for reasons we can't yet understand. And that's my point about Robert--think outside stereotypes, pay attention to different metaphors and analogies.
And I could go on about Occupy Wall Street, about individualism and cooperation and collaboration. And dependence. Many people in Washington are shouting at us about "job creators" by which they mostly mean corporations. And individuals and self-sufficiency, by which they mostly mean people who can succeed somehow, magically, as individuals, dependent upon no one. (Really? not even their moms? Were they like Romulus and Remus, raised by a wolf? Even those guys all the taxpayers bailed out? Even the government who gave them tax breaks and incentives and loans for their businesses?)
But the question really is: do we want to be dependent on corporations? Or do we want to be dependent on government, which, by the way, is you and me, the body politic? Which is the same as being dependent on ourselves, which is, I suppose, something like independence, but not cancerous independence, the collaborative interdependence of the scientists I discussed above. The ability to work cooperatively within a body, each cell specialized to its task, but with the security of the body's integrity grounding all.
And wouldn't it be better and promote the healthy rise of the individual within this economy if our resources were pooled to ensure healthcare for all, independent of specific jobs, so that we could strike out on our own, specializing as cells do, something like Steve Jobs, who advised Stanford graduates (and all of us, I suppose):
Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.But that would be more than I could say coherently at this time. And is Jobs' message the same as Cain's or is it different?
Let me leave you with this image of my son: we are all Robert at this historical moment, mute within a society that threatens our survival as cooperative individuals, working to the common purpose of freedom and the pursuit of happiness. Robert communicates by raising one hand for yes and one for no--and that in response to what someone else has determined as his choices. Which is a metaphor for our voting booths: we must say yea or nay to someone else's choices, not our own, the choices those in power give us, while we remain unable to express the complexity of our own thoughts and reactions--which is why Occupy Wall Street seems such a primitive and amorphous mass to some.
Just like my son.